I'm very close to revising from band to bypass. I have polycystic kidney and liver disease, and I'm concerned that the surgery could (possibly) escalate issues with that disease. My kidney and liver function is normal, but even so, I have a 50/50 chance of needing dialysis and a transplant as I get older. I'm curious to know if anyone here has PKD and/or PLD and underwent a RNY. As of now, I only need to lose 40 pounds. But once the band comes out due to complications, I'm afraid that number will climb. Ugh.....so many things to consider!

What do your nephrologist and hepatologist say? I wouldn't do anything without their blessing--and a 40lb weight differential hardly seems enough to go in and do surgery. Are you self-pay?

My thoughts are that once you start cutting in your abdomen, there will be scars/adhesions. You will be messing in the same area as your liver and also anterior to your kidneys, so it could cause scarring there as well. That could potentially cause problems if it became necessary to do a transplant of either kidney or liver...so that's why I wouldn't do anything without their express consent.

((hugs)) and sorry you suffer with these 2 terrible diseases! I have a friend with PKD.

6 hours ago, FluffyChix said:

What do your nephrologist and hepatologist say? I wouldn't do anything without their blessing--and a 40lb weight differential hardly seems enough to go in and do surgery. Are you self-pay?

My thoughts are that once you start cutting in your abdomen, there will be scars/adhesions. You will be messing in the same area as your liver and also anterior to your kidneys, so it could cause scarring there as well. That could potentially cause problems if it became necessary to do a transplant of either kidney or liver...so that's why I wouldn't do anything without their express consent.

((hugs)) and sorry you suffer with these 2 terrible diseases! I have a friend with PKD.

Thanks FluffyChix.... I have a new nephrologist and asked him at my visit a few weeks ago. He said that though the bypass can be good, in my case, he's against it. Even though my kidneys are functioning perfectly, given that the bypass changes absorption and anatomy, he doesn't recommend it. The hepatic cysts are really just an extension of the PKD; pretty much a non issue.

When I mentioned this to my bariatric surgeon, he doesn't see any issues with the bypass and PKD. He also said that the bypass can be reversed....if down the road it became an issue. I trust him 100%, but I would not go into a bypass revision with the mindset that I can have it reversed. It's too much of an ordeal, and I don't want to put my body through so much surgical upset.

I lost almost all my weight with the band, but gained half of it back over the past few years. Like the rest of us here, my biggest concern is continuing to slowly gain; ending up where I was when I started this journey close to 5 years ago. I just wish I'd had the bypass to begin with, but I chickened out and went with the band/plication instead. At 62 with about 40 pounds to lose, I'm not sure I want to do anything further. For now, I will have the band removed next week, then work with the nutritionist at my surgeons office. At least I still have the plication, which should help limit the amount I eat in a sitting. The reality is, with ALL of these surgeries, after the honeymoon period is over, WE need to do the work. I was stellar with the band for the first 16 months, then I learned how to eat past the signal. I know a few people who gained a substantial amount of weight a few years after their bypass, and I know some who have stayed thin for many years after the procedure. In the end, we have to make lifestyle changes for continued success. Not always so easy....

((hugs)) Do you have to take steroids during a flare up of the PKD?

Sadly, you hit the nail on the head. These are operations on our guts, not our heads. And realistically, I would start with a good counselor and with making sure my thyroid and B vitamin levels and Vit D all look good. Maybe that would help you lose easier on a good diet?

If it were me, I'd probably not risk the surgery. I think you will figure out how to eat around the RNY. And since your weight is so low, it would not have a big enough risk/benefit reward for me. The last think you want are bunches of scars and adhesions messing up a potential kidney transplant. It might even make you ineligible if you posed a high risk.

Maybe you could try other types of diets like IF with calorie/carb control?

1 hour ago, FluffyChix said:

((hugs)) Do you have to take steroids during a flare up of the PKD?

Sadly, you hit the nail on the head. These are operations on our guts, not our heads. And realistically, I would start with a good counselor and with making sure my thyroid and B Vitamin levels and Vit D all look good. Maybe that would help you lose easier on a good diet?

If it were me, I'd probably not risk the surgery. I think you will figure out how to eat around the RNY. And since your weight is so low, it would not have a big enough risk/benefit reward for me. The last think you want are bunches of scars and adhesions messing up a potential kidney transplant. It might even make you ineligible if you posed a high risk.

Maybe you could try other types of diets like IF with calorie/carb control?

I haven't had any flare ups with the PKD, so I haven't had to take steroids. I've been pretty lucky so far, but as I age, things can change. It's a weird disease; no cure, but many people don't even know they have it and end up dying from something else. Even still, the last CT scan showed that my kidneys are enlarged with all the cysts, but there isn't really anything to do, unless the labs start to show impairment of function or they see protein in my urine. For now, it's just a bit of flank pain.....which comes and goes. I just have to be careful and clear all prescription drugs through my nephrologist. I take Meloxicam for joint pain, which he says is a huge no no. I'll have to figure that one out. Though I don't take it every day, it's been a wonder drug for me; the difference between painful/miserable walks, to being able to walk my dog for close to an hour without wanting to lay down in the middle of the street and cry.

I've never heard of the IF diet, but I just looked it up online. It's very interesting. My husband stopped eating dinner a couple of months ago, and dropped a good amount of weight. He wasn't following that plan, but just decided to stop eating at around 4pm. It's worked well for him.

I do have thyroid issues and have been taking meds for many years. I'm hypo-thyroid and have Hashimotos disease. My numbers are good on the dose of Synthroid I'm on, so I've got that part covered. I'm going to work with the nutritionist at my surgeon's office. I love her and she can help me get on an eating plan that works at this stage. This might be TMI, but I had a total hysterectomy a year before my band surgery, and it's 5 times harder to lose the same pound than it was before menopause and losing my ovaries. I remember "older" people always telling me to lose the weight while I'm young; it's much harder when you're older. I was young and cocky and didn't believe them. HA! And here I am.......struggling along

Thanks for your input, FluffyChix - I appreciate it When did you have your surgery? I see you live in Texas. I'm in California, and we've been talking about possibly relocating to someplace around Austin (Hill Country), when we retire in a couple of years.

I'm still pre-surg. I've been doing the pre-surg diet since May and hope to have surgery in February or early March.

I'm 55 and post meno by total hyst. I just found out I'm hypothyroid and started with Synthroid as well as B1 (low in it). It's made a lot of difference for energy. Also, when I eat processed sausage like pepperoni, or eat beef, or lots of cheese, my joints hurt SO badly! I'm 6+ year hormone positive breast cancer survivor so am on Femara. The Femara is an androgen blocker--a biologic hormone therapy for BC recurrence. So losing is impossibly difficult. I also have had PCOS since I was a kid.

I can totally relate to your struggles!!! Hang in there.

The only way I survive is to focus on low fat protein (adequate, not high protein), and lots of low carb veggies. I've also added back 2 small servings of low carb fruit and 1oz of nuts each day. I don't do well with carby stuff like grains and starches.

1 hour ago, FluffyChix said:

I'm still pre-surg. I've been doing the pre-surg diet since May and hope to have surgery in February or early March.

I'm 55 and post meno by total hyst. I just found out I'm hypothyroid and started with Synthroid as well as B1 (low in it). It's made a lot of difference for energy. Also, when I eat processed sausage like pepperoni, or eat beef, or lots of cheese, my joints hurt SO badly! I'm 6+ year hormone positive breast cancer survivor so am on Femara. The Femara is an androgen blocker--a biologic hormone therapy for BC recurrence. So losing is impossibly difficult. I also have had PCOS since I was a kid.

I can totally relate to your struggles!!! Hang in there.

The only way I survive is to focus on low fat Protein (adequate, not high protein), and lots of low carb veggies. I've also added back 2 small servings of low carb fruit and 1oz of nuts each day. I don't do well with carby stuff like grains and starches.

Wow, I'm so sorry you went through so much, especially breast cancer. That is very scary, but 6 years is great! I hope you never have to deal with it again.

Yes, many struggles for both of us. That's not to say it's impossible to lose weight, but there are more challenges. That's interesting......about processed meats, beef and cheese making your joints hurt much worse. I'm going to pay more attention to that. I know I'm much worse after the weekends, when we drink wine, eat cheese and other more fatty types of foods. We eat pretty healthy during the week, but come the weekend - we're off! It makes a lot of sense, though..... As good as they taste, those foods are toxic. I feel best when I eat lean protein, veggies and a little bit of carb; like a small red potato or ½ cup of brown rice or quinoa, etc. As long as the carbs are whole, I'm good. Bread, crackers, etc.....not so good; even if they're 100% whole grain.

I wish you ALL the best with your upcoming surgery. It's a huge life changing step, and I think you will be very happy with the results. You just have to be prepared for the time when the initial honeymoon is over.... It happens with all of the surgeries, which is when the work really begins.

Oh I so agree!

I didn't put 2 and 2 together until I eliminated them from my diet. Recently with the fall birthdays and holidays I've eaten a bite or 2 of stuff like that and realized that it really makes my joint/bone pain so much worse. You might try eliminating then testing them! Wine def makes me hurt more!

But oh.....how I love my wine But the biggest issue with it is, that it makes me eat way more than I normally would. And things that I shouldn't be eating. But that is going to have to change.....if I want to take care of my body. I can't say that I would give up the ritual forever, but maybe limit it to once a month.